Amyotrophic Lateral Sclerosis (ALS) Families Project

Amyotrophic Lateral Sclerosis (ALS) Families Project

Quick Info:

Status:
Currently Recruiting
Estimated Enrollment:
60
Phase:
N/A
Treatment Type:
Genetic counseling and testing
Trial Type:
Family-based, observational
Sponsor:
Columbia University
Primary Investigator:
Contact Information:

Trial Goal:

Genes

Genes

Identify new fALS genes linked to the disease
Tests to Expect:
Electromyography (EMG)

Electromyography (EMG)

Cognitive Tests

Cognitive Tests

Update Notes:

3/11/2019Trial added

Locations:

Columbia University, New York, 10032

Other Information:

Purpose: This program provides family members of individuals with familial ALS the opportunity to contribute to research focused on learning more about why motor neuron degeneration begins and how or why it progresses. This study provides genetic counseling and testing to help participants understand and manage their risk and determine if they want to learn their genetic status. This study will follow unaffected ALS gene mutation carriers on an annual basis to gather essential information that will ultimately help researchers develop novel therapies for the prevention and treatment of ALS.
Eligibility: 18 Years to 105 Years, all genders
Details: Approximately 10% of people with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's Disease, have a family history of ALS or a related condition called frontotemporal dementia (FTD). In most of these familial cases, and a significant number of "sporadic" patients with no family history, a mutation is present in one of a growing number of genes that have been associated with ALS and/or FTD. The ALS Families Project will study unaffected carriers of ALS/FTD-associated gene mutations to investigate the first steps in the disease process that leads to motor neuron degeneration, with the goal of identifying early disease targets and points of intervention to slow or stop disease onset and progression. Unaffected individuals who have either a family member with a known ALS/FTD-associated gene mutation or have a strong family history of ALS and FTD are invited to participate in the ALS Families Project. For those who enroll, research visits will occur every 6-12 months.
Collaborator(s):
News Articles and Summaries:
ALS Forum:
First Published on Clinicaltrials.gov: 3/6/2019
ClinicalTrials.gov ID: NCT03865420
Trial Protocol as Published on Clinicaltrials.gov:
ClinicalTrials.gov